A Good Friday

Black Friday began on a bleakish note for us. Charlie dutifully got into the white car at 7.45am and walked into the waiting room of LabCorp, to get his blood drawn for testing. After a half-hour wait during which the receptionist, with a quite large sigh, prepared all the paperwork for the tests, Charlie sat down in a chair opposite a technician, Jim and me standing close by. He said several "no's" once the rubber strip was tied around his upper arm and the needle and vial produced, and then it was clearly time to get out, Jim getting Charlie back to the car while I told the front desk, we'd have to reschedule.

Charlie's neurologist has wanted him to get a number of tests done since the summer, some to test for various genetic conditions, some due to the medications Charlie is taking. Charlie had gotten his blood drawn back in the spring with Jim and my parents beside him. Alas, the lab was unable to perform many of the tests. Jim and I had been hoping that that would be the end of it but, vae nobis, it was not.

Once home, Jim and I formulate a Plan:

I contact the neurologist and ask if all those tests are really needed? (I.e., do we really need to draw that much blood from Charlie?)

Jim plays the role of LabCorp Location Scout to ascertain if it's the right sort of setting.

In the past, not being able to have a successful experience with the testing would have made us feel like this Friday was a truly black one indeed. Jim and I reminded each other that we needed to do exactly the opposite, that Charlie himself comes out of such situations feeling vexed and ashamed and just not so great.

And we all had a good Friday. It was the last day of my parents' visit and they spent a good part of the day making paper-wrapped chicken. The little parchment packets of chicken, marinated in soy sauce, rice vinegar, ginger, and green onions, are perfect lunchbox food. My dad had cut up a stack of neat rectangles of parchment paper after we'd cleaned up the Thankgiving dinner and, yesterday morning while my mom chopped and mixed, he and Charlie and I made a fast trip to Pathmark to get one more packet of chicken breasts. Charlie (we have photographic proof, you can see it above!) helped to pack up the chicken, counting out eight pieces per Ziploc with my mom.

Charlie had a lot to work through after a tough start to the morning, not to mention the lingering effects of his cold, Thanksgiving festivities, my parents' visit, a short week at school. And, of course, it's only the second week of him being at his new school. He asked to go to his favorite diner all day long. While not always very happy to hear he'd have to to wait, he did, and his patience endured through a last-minute detour to my office in Jersey City.

Mom left about half the chicken in the freezer. We'll see how long it takes (Saturday afternoon?) before Charlie fishes it out for an anytime snack. But you can be sure, I'm safeguarding some for at least two lunches next week.

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And Charlie looks like he is enjoying helping too!
All in all a very good week,and a very good first 2wks of school.
These days I no longer worry about tests, if we get them done great, if not, not to worry. I think this helps Dimitri as I’m not stressing about them before hand. He is suposed to have a blood test every 6months for liver function due to the meds he takes for seizures. We go to a microbiologist just up the road, Dimitri likes to visit her, puts her in the “correct” position for taking blood and sits in the seat. When it actually comes to taking his blood it’s not so easy as he may flinch, and there is danger of damaging a vein, so we may have to rethink this (hospital setting, lots of staff). But we we still visit her as it helps him to go through the process of what needs to be done.

I’m scared of needles too. It’s a bit strange, because I had no problem with a tattoo, but haven’t gone to the dentist in 5 years. It has gotten better for me, since I decided to just start explaining my level of fear to the person doing it. I tell them not to tell me it’ll be ok. I am terrified, I will probably hold my breath and forget to breathe. I tell them I will most likely gag, and possibly throw up. I will also usually cry. Usually now, they just put the trash can by me, and don’t let me leave right away to make sure I don’t pass out.

Tony needed minor dental work two years ago. The dentist did the work at Children’s Hospital under anesthesia. Our pediatrician put in an order for a blood draw and we had him tested for everything we could think of while he was under. So we are covered for awhile. I only wish we had trimmed his toenails while he was sleeping!
Tony has been able to tolerate much more since that time but a blood draw might be difficult. I believe that puberty was also a big factor-he seemed to be more sensitive to touch the whole year he was in seventh grade. He has adjusted to his new tall body now.

Tony needed minor dental work two years ago. The dentist did the work at Children’s Hospital under anesthesia. Our pediatrician put in an order for a blood draw and we had him tested for everything we could think of while he was under. So we are covered for awhile. I only wish we had trimmed his toenails while he was sleeping!
Tony has been able to tolerate much more since that time but a blood draw might be difficult. I believe that puberty was also a big factor-he seemed to be more sensitive to touch the whole year he was in seventh grade. He has adjusted to his new tall body now.

Last time trying for blood tests to check liver due to the meds did not happen as the lab now associated with them does not use papoosa board and wanted Matt to sit on my lap. Lab in same bldg as Dr has him lie on a bed. I asked for us to be allowed there ahead of time, since appt is Dec 30th should call next week to remind them.
Does Charlie wear his jacket indoors often? Matt woke up about 6:45 this morning, most likely since it rained and that is when sun came up. He seemed OK that the Backpack and lunch bag were not out – chose tater tots and did not eat any.

Kristina, why can’t he have blood drawn at your home? I had a draw done in my dining room a few years ago for insurance, so I don’t see why one of those mobile-type nurses couldn’t do the same thing for Charlie. Just a thought.

@Amy, I had never thought of that—will have to look into it. If it is totally crucial to have the testing, I do think we might also try a hospital as you did, Wendy—Charlie can handle dental check-ups but he has yet to have an x-ray and certainly if needed anything more, such as a cavity filled, I think he would need to be under anesthesia.
@Emma, Charlie is taking some anti-seizure meds—I need to clarify with his neurologist what exactly all the testing is for. Yes, he was glad to help (and will be glad to eat the chicken, too).

That photograph is so heartwarming. Charlie looks like he’s twice as tall as his grandma, and delighted with being a helper. And that recipe sounds great. Can it be made with turkey?
There’s always too much anxiety when kids are getting jabs, especially when they are of the “hold on, just one more vial” variety. Hey, I still feel that discomfort, especially when they approach me with five or six of those big color-top vials to fill.
What coping mechanisms does Charlie have to help him through stressful, scary situations – aside from refusal to proceed? Visual or aural walkthroughs, acting out going to the appointment beforehand? When Jake “got needles,” he used to shake like an autumn leaf and fix me with his tear-filled eyes- he wouldn’t look at the procedure – and just keep saying, “I’m scared, I’m scared.” All we could do was keep looking into his eyes as lovingly as possible, and repeat, “Yes, you’re scared, and you be okay.” like a mantra.
After the sticks were over, we would all then congratulate him on what a brave guy he was. Then he was proud of himself.
It must be so tough for Charlie, because he has competing desires – the one to give in to his fear, and the desire to be a brave big kid. Does he use adjectives like “scared” to describe inner states? Too bad there is no book to read to him about going to the doctor’s for bloodwork. Are there picture books to read to autistic children to help them deal with unhappy situations?

That photograph is so heartwarming. Charlie looks like he’s twice as tall as his grandma, and delighted with being a helper. And that recipe sounds great. Can it be made with turkey?
There’s always too much anxiety when kids are getting jabs, especially when they are of the “hold on, just one more vial” variety. Hey, I still feel that discomfort, especially when they approach me with five or six of those big color-top vials to fill.
What coping mechanisms does Charlie have to help him through stressful, scary situations – aside from refusal to proceed? Visual or aural walkthroughs, acting out going to the appointment beforehand? When Jake “got needles,” he used to shake like an autumn leaf and fix me with his tear-filled eyes- he wouldn’t look at the procedure – and just keep saying, “I’m scared, I’m scared.” All we could do was keep looking into his eyes as lovingly as possible, and repeat, “Yes, you’re scared, and you be okay.” like a mantra.
After the sticks were over, we would all then congratulate him on what a brave guy he was. Then he was proud of himself.
It must be so tough for Charlie, because he has competing desires – the one to give in to his fear, and the desire to be a brave big kid. Does he use adjectives like “scared” to describe inner states? Too bad there is no book to read to him about going to the doctor’s for bloodwork. Are there picture books to read to autistic children to help them deal with unhappy situations?

What a handsome helper! I hate to say it, but I’m pretty sure if the testing is for the level of drug in his system then it’s pretty important. I remember when Patrick was on anti-seizure meds we had to have the bloodwork done every 6 months. Have you tried the hospital? Here there is a clinic for blood draws and we were able to get the IV tech from the emergency room to come up to take Patrick’s blood. It went quite quickly and easily because of his skill and proficiency. Just a thought.

What a sweet photo of Charlie and his grandmother/your mother! He looks like he is really enjoying assisting in the preparations.
“Too bad there is no book to read to him about going to the doctor’s for bloodwork.”
Cindy Bailey at one time put out really nice photo-based Social Stories on going to the dentist and doctor (I say used to because I don’t think they are published anymore, but we got ours used). However one might compose one’s own Social Story. I thought those might not be of interest to our daughter, but she was surprisingly interested and we spent a fair amount of time on the pages describing shots and blood draws. The Social Story was not solely responsible, since there had been some prior graduated buildup to medical procedures and rehearsal of those that we could rehearse at home, but I believe that it was a strong contribution to knowing what was coming up; I recall bringing the book with us to the clinic and reciting the sentences with her on the way to the lab and when she was waiting for the venipuncture. The process went smoothly (thank goodness). We still review these for a couple of days before a visit to the dentist or doctor. YMMV.

We already know that Charlie can handle the blood draws. A confident, skilled, and efficient technician to do the job is all you need.
We’ve had some nightmarish experiences with blood draws and IVs as well. However, it always goes much better when the person knows what he/she is doing. One thing that worked for us was finding a new place with a skilled supervisor, going in during that supervisor’s hours, and having that person assist and guide the technician during the procedure. We have gone back to this place ever since, and to see that same tech, who is now able to do the blood draws quickly and confidently on our (not overly) terrified boy.
We have also passed on less urgent blood tests (such as purely exploratory genetics testing), only to request them again later when Adrian was inpatient or in the hospital for a scheduled procedure. The only trouble with that approach has been trying to track down the results afterward, as the tests results, if completed, are not sent to our doctor but are instead usually embedded somewhere in our son’s hospital records.